CKD Resource Links

Kidney Data

• DialysisData.org - Site operated by the University of Michigan Kidney Epidemiology and Cost Center under contract from the Centers for Medicare & Medicaid Services; provides information on clinical measures, methodology for developing the Dialysis Facility Reports (data on each facility), and downloadable DFR data for researchers

• Dialysis Facility Compare - Government database of dialysis facilities, treatments they provide, and info on how well each dialysis center delivers care and services they provide, patient experiences with dialysis centers, and much more.

• Scientific Registry of Transplant Recipients - Transplant program-specific reports by organ containing contain information about the candidates waiting for transplant, outcomes on the waiting list, the transplant recipients, the donors, and the outcomes after transplant.

• United Network for Organ Sharing - Site offers the option to see national, regional, state, or center-specific data by organ.

• United States Renal Data System - National data system that collects, analyzes, and provides an annul report on chronic kidney disease, dialysis and transplant in the United States

Dialysis access

• Fistula First Catheter Last - A fistula, preferred type of vascular access, site has information for patients and professionals, surgeon training

• Infection Control for Peritoneal Dialysis (PD) Patients After a Disaster - Government site with information for care for PD patients to prevent infection, especially following natural disasters when flooding may be present, access to medical supplies may be limited, or PD patients who may be living in temporary housing

• Peritoneal Dialysis Placement: What to Expect - Describes the surgery, types of PD catheters, follow-up, how to care for a PD catheter, and possible problems

• The Art of Making Your Fistula or Graft Last - How to recognize possible problems (stenosis, aneurysms, pseudoaneurysms, improving cannulation

• The Bathtub Presternal PD Catheter - Information about and benefits of this type of PD catheter and what the patient can do

• Vascular Access for Hemodialysis - Government site with info about vascular accesses (fistula, graft, and catheter), placement, use, care, and potential problems

• Vascular Access: A Lifeline for Dialysis - Learn which access is best and why, and how to protect your access so it will last as long as possible in this module that can be downloaded in print or worked through online to get an action plan and certificate

Dialysis & Transplant Regulations

• ESRD Conditions for Coverage Regulations published April 15, 2008 that dialysis facilities must meet to be Medicare certified (PDF)

• ESRD Interpretive Guidance Three column table: a computer identifier tag (“V tag”); text of the regulation; and guidance for ESRD surveyors in interpreting the regulation; navigate using hyperlinks to the page number for the Condition in the Table of Contents

• Transplant Laws and Regulations Links to laws and regulations, interpretive guidance, and survey process for organ transplant programs.  Medicare Conditions of Participation for organ transplant programs took effect on June 28, 2007. A transplant program is defined as a component within a transplant hospital that provides transplantation of a particular type of organ (heart, lung, heart-lung, liver, intestine, kidney, pancreas including kidney-pancreas).

Employment resources

• ABILITYAwareness.org - Non-profit organization from by ABILITY Magazine and AbilityJos. The site dedicated to building a world of inclusion for people with health problems and disabilities. THey engage volunteers with health problems and disabilities to build accessible low-income homes

• ABILITYJobs.com - This is the largest stand-alone resume’ bank for people with disabilities. This site helps companies fulfill affirmative action requirements.

• ABILITYMagazine.com - Award winning magazine by Time-Warner covers disability issues. Has a mission to provide new insights into individual levels of ability. Ranked in the top 50 magazines in the world.

• ABLEDATA Assistive Technology Information - Government funded program. Provides info on assistive technology and rehab products. The aim is to help disabled consumers and their care partners, organizations, and professionals.

• American Association of People with Disabilities - Largest national nonprofit member group in the U.S. that crosses disability lines. Aim is to ensure economic self-sufficiency and political empowerment for millions of Americans with disabilities.

• Americans with Disabilities Act Home Page (ADA) - Government site by the U.S. Department of Justice. Provide info on the Americans with Disabilities Act and its enforcement. Includes employment, transportation, education, housing, labor, and more.

• America’s Career Infonet (a division of CareerOneStop) - Links to facts about jobs with wages and employment trends. Learn what education, knowledge, and skills are needed for most jobs. Has employer contacts, profiles for labor markets in each state, and cost of living facts.

• America’s Job Bank (a division of CareerOneStop) - Lnks to state Employment Service offices and helps people looking for jobs to find openings (not disability specific)

• America’s Service Locator (a division of CareerOneStop) - Site helps employers and job seekers find services they need at a Career One-Stop Center. Enter a zip code and choose services you want, or call (877) US-2JOBS for help. (Not disability specific).

• Business Resources for Disabled Entrepreneurs - Our guide to Business Resources for Disabled Entrepreneurs was created to help people living with disabilities to find or maintain meaningful self-directed careers. Whether that means starting their own business or building a career in other businesses our guide provides tools and direction to help people accomplish their goals.

• CareerBuilder - Website links to job vacancies, allows posting a resume, shares tips to help in a job search (not disability specific)

• CareerOneStop - Links for job seekers, workers, business or human resources, students or learners, and workforce professionals. (Not disability specific.)

• Department of Veterans Affairs Vocational Rehabilitation Services - Vocational education, counseling, and job resources for veterans.

• Disability Rights Division of the U.S. Department of Justice - Government agency. Works to uphold civil and constitutional rights of all American. The Division enforces federal statutes that prohibit discrimination on the basis of race color, sex, disability, religion, family status, and national origin.

• Disabled Person - Nonprofit organization that has a job board for people with disabilities

• DiversityWorking - Helps people find careers with the nation’s leading employers.

• Employment: A Kidney Patient’s Guide to Working and Paying for Treatment - Info on working, vocational rehabilitation, paying for treatment, disability programs (SSDI and SSI), federal laws that help kidney patients, glossary, resources (PDF). NOTE: Last updated in 2003.

• Equal Employment Opportunity Commission - Government agency. Enforces civil rights for protected groups, including those with disabilities

• Federal Employment of People with Disabilities - Government site by the Office of Personnel Management. Helps people with disabilities find federal jobs

• Heath Resource Center - National Clearinghouse on Postsecondary Education for People with Disabilities. One of 3 clearinghouses for the Individuals with Disabilities Education Act (IDEA).

• Job Accommodation Network - Information on the American with Disabilities Act, job accommodations, legislation, employment and other resources, EEOC Guidances (fact sheets), and web tools

• Kidney Failure and Your Work Life - Learn about working, paying for treatment, and where you can get help. A great resource from our sister site, kidneyschool.org.

• KidneyWorks - Patient advocacy program of the non-profit American Association of Kidney Patients (AAKP) and Medical Education Institute (MEI). Designed to help working-age people with Stage 3-5 CKD— kidney function less than 60%—and help them keep their jobs, health plans income, and quality of life.

• Monster Board - Access to thousands of jobs worldwide. (Not disability specific)

• National Business & Disability Council - Free service helps people with disabilities find jobs.

• National Federation of the Blind Job Listserv - Private listserv to connect blind people with jobs and jobs with blind people.

• National Federation of the Blind Resources for Working - Info on employment and resources to help people who are blind and visually impaired.

• NTI@Home - Job opportunities for Americans with disabilities who need home-based work.

• Office of Disability Employment Policy - Government site. Resources for work, housing, health, education, transportation, income support, community life, and civil rights for people with disabilities.

• Rehabilitation Services Administration - Has oversight over state vocational rehabilitation (VR) agencies, includes links.

• Social Secuirty Work Site - Government site. Info on the Ticket to Work progam, with links to info for people with disabilities and services providers (employment networks and vocational rehabilitation agencies).

• Social Security Disability - Government site. Describes federal disability benefits programs for adults and children, how to qualify, the process, laws that protect people with disabilities, and more.

• Ticket to Work (people with disabilities) - Info on the Ticket to Work program for people with disabilities ages 18 through 64 who want to work. Includes webinars, tutorials, contacts for job coaching, job counseling, training, benefits counseling and job placement.

• U.S. Commission on Civil Rights - Federal agency. Investigates discrimination claims, suggests policies, and acts as an information clearinghouse. Has info on how to file a discrimination claim.

• USAJobs - Government site. Lists employment opportunities in the federal government.

• ZipRecruiter - Free searchable database for those seeking full- or part-time employment or contract work. You can search by job title or industry as well as salary. Signing up with an ID and password allows you to apply for jobs and track where your application is in the hiring process.

Financial Resources

• American Kidney Fund - AKF offers small financial grants for patients, disaster relief, and Health Insurance Premium (HIP) aid (with donations from dialysis providers and others). Apply through a dialysis social worker.

• American Organ Transplant Association - Bus fare for transplants ( Greyhound) through a transplant coordinator or social worker, info on other resources

• Angel Flight - Provides free air transportation for health care for those who qualify.

• Benefit Eligibility Estimate Screening Tool - Social Security’s Benefit Eligibility Screening Tool (interactive). Helps you see if you qualify for Social Security benefits, but is NOT an application. Info you share is not saved.

• Benefits CheckUp - This National Council on the Aging site helps those ages 55+ find resources in their state to pay for different needs.

• Children’s Organ Transplant Association - Fundraising help & family support for children needing transplants

• Dental Lifeline Network - Free dental services through volunteer dentists; links to state programs.

• Guide to paying for college for students with disabilities - Aspiring students with disabilities can use our table of contents to find the best scholarships for them.

• HelpHOPELive - Non-profit supports community fundraising (tax deductible for donor) for organ transplants.

• MortgageLoan.com - Mortgage and home loan info for people with disabilities.

• National Foundation for Transplants - Tips for fundraising, advocates for organ donation.

• National Kidney Foundation - Some NKF groups offer limited financial help. Fnd a local office by city, state or zip code.

• National Living Donor Assistance Center - Financial help to those who want to donate an organ. Gives priority those who could not otherwise able to afford the travel and living costs to donate. Apply through a transplant program.

• Needy Meds - Info on drug pricing by zip code, drug assistance programs, drug discount cards, and more.

• Refinance & Mortgage Guide for People with Disabilities - Resources to navigate the red tape of real estate purchases.

• RxAssist Patient Assistance Program Center - Info on patient assistance programs by drug & drug maker.

• Social Security Administration - Info and applications for Retirement, Survivors and Disability Insurance Benefits, Supplemental Security Income (SSI), and more.

• Social Security Disability - Government site. Describes federal disability benefits programs for adults and children. Learn how to qualify, the process, laws that protect people with disabilities, and more.

• State Pharmaceutical Assistance Programs - Database of a limited number of states that help pay for drugs & what help each one provides.

• Veterans Benefits Administration - Help in multiple areas for veterans and their families.

• You Caring - Free to recipient online peer-to-peer fundraising site for health and other needs; donor pays a 2.9% fee (+ .30 for credit card).

Insurance Resources

• Insure U - National Association of Insurance Commissioners info for consumers. Covers ALL kinds of insurance, with links to state insurance department websites.

• Centers for Medicare and Medicaid Services - Learn about Medicare, Medicaid, State Children’s Health Insurance Program, and CMS regional office contacts.

• Paying for Dialysis or Transplant - Learn about how Medicare and other programs can help you and who to contact for your questions.

• Medicare Benefit Policy Manual, Chapter 11 - End Stage Renal Disease - Government site. A manual describes coverage policies for the Medicare ESRD benefit.

• Medicare Claims Processing Manual, Chapter 8 - Outpatient ESRD Hospital, Independent Facility, and Physician/Supplier Claims - Government site. A manual describes processing Medicare claims for ESRD

• Health Insurance Portability and Accountability Act (HIPAA) - Your rights and protections for health insurance under HIPAA law, including continuing coverage if you lose a job, change jobs, move, or get divorced.

• Continuation of Health Coverage - Department of Labor’s consumer information on COBRA (continuation of health insurance).

• Health Insurance Marketplace - Options for health plans on federal or state Marketplaces (also called exchanges).

• Indian Health Service - Info on health services for American Indians, and links.

• Medicaid - How to qualifiy for Medicaid, services, and links to state program websites for consumers.

• Medicare - All about Medicare, including eligibility, enrollment, benefits, claim filing, Medicare payment amounts.

• Choosing a Medigap Policy: A Guide To Health Insurance For People With Medicare - Health insurance plans to fill in Medicare gaps, what they cover, your rights to buy one.

• Medicare and Other Health Benefits: Your Guide to Who Pays First - How other health plans (employer, COBRA, car accident, etc.) work with Medicare, who should pay first, where to get more help

• Medicare Coverage of Kidney Dialysis and Transplant Services - Booklet that answers questions that people with kidney failure may have about what Medicare covers.

• MyMedicare.gov - Secure site to see claims, check eligibility, enrollment, other Medicare benefits and more.

Journals and Publications

• Advances in Chronic Kidney Diseases - Bi-monthly journal with articles related to the early identification, prevention or delay in progression of kidney disease; multidisciplinary case management of patients, organ effects of kidney disease; epidemiology and outcomes research; primary treatment methods, dialysis and transplantation; technical aspects of treatment; care of the critically ill patient with kidney failure in the intensive care setting; new therapies for kidney failure; and health care research in chronic kidney disease

• American Journal of Kidney Diseases - Monthly journal includes articles on applied physiology, dialysis/chronic uremia, hypertension, urology, pathology, and transplantation

• American Journal of Nephrology - Bi-monthly journal that presents topics in basic science and reports of experiments and reviews of timely topics by experts

• Clinical Journal of the American Society of Nephrology - Monthly journal of the American Society of Nephrology with papers on clinical topics

• Hemodialysis International - Quarterly journal of the International Society of Hemodialysis with papers on clinical and experimental topics related to dialysis; publishes the Annual Dialysis Conference supplement

• Hypertension, Dialysis, Consultative Nephrology (HDCN) - Subscription-based info service with articles, abstracts, and lectures; archived items are in Free Zone; KEY Zone has recent lectures, articles, etc.

• Journal of Nephrology Social Work - Semi-monthly Journal of the Council of Nephrology Social Workers available to CNSW members of NKF

• Journal of Renal Nutrition - Bi-monthly journal of the Council on Renal Nutrition available to CRN members of NKF

• Journal of the American Society of Nephrology - Monthly journal of the American Society of Nephrology with papers on dialysis, transplant, research

• Kidney International - Monthly journal of the International Society of Nephrology with articles on transplant, nephrology, research

• Life Options archived newsletters - Newsletters for patients and professionals published from Jan/Feb 1999 to June 2009 on a wide variety of topics

• Nephrology Dialysis and Transplantation - Monthly international journal of the European Renal Association-European Dialysis and Transplant Association with papers on clinical and laboratory research in nephrology

• Nephrology News & Issues - Monthly magazine for health care professionals with recent news and articles about kidney disease and treatment

• Nephrology Nursing Journal - Bi-monthly journal of the American Nephrology Nurses Association

• Nephron Clinical Practice - Monthly journal with reviews/mini-reviews on up-to-date-topics, second opinions, case studies of genetic interest

• Peritoneal Dialysis International - Bi-monthly journal of the International Society of Peritoneal Dialysis

• PubMed (also called Medline) - National Library of Medicine database containing abstracts and some full text journal articles

• Renal Fellow Network - Blog written by and for renal fellows with near daily teaching topics

• Seminars in Dialysis - Bi-monthly publication focusing exclusively on cutting-edge clinical aspects of dialysis therapy

• Seminars in Nephrology - Bi-monthly publication provides scholarly review articles (1 topic per issue) focusing on subjects of current importance in clinical nephrology and related fields

• Transplantation Proceedings - Publication of the multiple international transplant societies and includes topics on world transplantation biology and medicine; published 10 times a year

Kidney Data

• DialysisData.org - Info on clinical measures, methods used for the Dialysis Facility Reports (data on each dialysis clinic, and downloadable data for researchers.

• Dialysis Facility Compare - This Medicare database of dialysis facilities, treatments they provide, and how well each center delivers care and services. Includes patient experiences with dialysis centers, and much more.

• Scientific Registry of Transplant Recipients - Transplant program-specific reports by organ. Has info about candidates waiting for transplant, outcomes on the list, recipients, donors, and outcomes after transplant.

• United Network for Organ Sharing - National, regional, state, or center-specific data by organ.

• United States Renal Data System - Collects and analyze chronic kidney disease, dialysis and transplant in the United States.

Kidney-Related Disease Education

• Diabetes - Explains causes, symptoms, risk factors, and treatments for diabetes.

• Explore Transplant & Living Donation - Training seminars to help professionals educate patients and their loved ones about transplant and living donatio. Includes videos and materials for patient education.

• Goodpasture Syndrome - Covers pulmonary-renal syndrome; a group of acute illnesses that can damage the lungs and kidneys.

• HealthyPeople.gov - Government site. Science-based, 10-year national objectives to improve Americans’ health. Webinars and info on health disparities. Search for “kidney”.

• Hemolytic Uremic Syndrome - Info on causes of HUS, who can get it, sign & symptoms, diagnosis, treatment and complications, including kidney damage/failure.

• Home Dialysis Central - Info on planning ahead to maintain your lifestyle by choosing a type of dialysis you can do at home. Learn what, how, and where on this site. Read articles, blog posts, message boards, use tools. MANY resources for patients and professionals.

• High Blood Pressure & Kidney Disease - What kidneys do, how high blood pressure affects kidneys, symptoms, diagnosis. Learn how to prevent or slow progression of kidney disease. Info on clinical trials.

• Iga Nephropathy - Info on Berger’s disease, which occurs when IgA deposits build up in the kidneys, causing inflammation that damages kidney tissues.

• Kidney & Urology Foundation - Patient and professional resources. Includes physician referrals, scholarships, emergency grants, a library of health information, and more.

• Kidney Glossary - Defines terms you may encounter when you get care for kidney disease.

• Kidney School - Free kidney learning center. Sixteen 30-minute modules cover topics from treatment options to nutrition, coping, and sexuality and fertility. Visit live to create a personal action plan, download PDFs, or listen to audio read by kidney patients. CE credits for professionals at credits.meiresearch.org

• Lupus & Kidney Disease - Info on who gets lupus, how common it is, symptoms, tests, treatments, diet, and complications.

• MedlinePlus - Government site. Info about health topics, treatments, drug information, and more.

• Medullary Sponge Kidney - Info on this birth defect, in which sacs that form in the kidney cause the kidney to look like a sponge and keep urine from flowing. MSK is rarely a cause of kidney failure.

• National Diabetes Education Program - Government site. Education for patients and the public on diabetes.

• National Kidney and Urologic Diseases Information Clearinghouse (NKUDIC) - Government site. Info about kidney and urologic diseases for patients, families, health care professionals, and the public.

• National Kidney Disease Education Program (NKDEP) - Info for patients, professionals and the public on kidney disease.

• National Kidney Foundation - Info on kidney disease,prevention, organ donation and transplants, patient and professional resources. Also find clinical practice guidelines, advocacy, kidney disease screenings, and links to local NKF offices.

• National Kidney Foundation A to Z Guide - Full text versions of many of the most popular NKF booklets for patients and professionals.

• Nephron Information Center - Nephrologist run site. List of dialysis clinics, education. Kidney Disease e-mail discussion group for pre-ESRD patients, dialysis and transplant patients, and professionals. Has a page on “Issues in Dialysis” and a calculator to find the eGF. Also has industry news, journal articles, links.

• NIDDK - Kidney Disease - Government site. Info for patients and professionals in English and Spanish. Offers links to organizations and journal references on kidney disease.

• Organ Procurement and Transplant Network (OPTN) Patient Education - Government site. Links to ino on transplant, such as a comprehensive guide, patient brochures, resources. Also has a helpline for general questions about transplant.

• Polycystic Kidney Disease - Info on this genetic disorder that causes cysts to grow in the kidney (and perhaps liver and brain.)

• Professional Education Resource Center - Resource center for professionals CEs to improve patient outcomes. Includes topics by renowned faculty.

• Renal Artery Stenosis - Info on narrowing of one or both renal arteries, the vessels that carry blood to the kidneys. RAS causes high blood pressure that can damage kidneys.

• RenalWeb - Dialysis topics, discussion boards for patients and professionals, “yellow pages” for suppliers, chat, advocacy for dialysis care reform.

• The NephCure Foundation - Info and research seeking the cause and cure of nephrotic syndrome and focal segmental glomerulosclerisis (FSGS). Advocacy alerts.

• UNOS Transplant Living - Helpful info for people interested in transplants. Includes info for pediatric patients,living donation, and support groups, under “Community”

• YourKidneys.com - DaVita website. Info from medical experts, message boards, kidney disease education, health tools, and patient resources

Non Kidney-Specific Resources

• ABA Lawyer Referral Directory - Find a lawyer in your area who specializes in the area of law you need.

• AMA Doctor Finder - Find a doctor in your area who specializes in the area of medicine you need.

• DisabledTravelers.com - Provides a comprehensive list of travel resources for people with disabilities, health concerns, and mobility concerns.

• Eldercare Locator - U.S. Administration on Aging site to locate services for older adults and their families.

• Home Health Compare - Find and compare home health agencies in your area by certain outcome measures.

• Hospital Compare - Fnd and compare hospitals in your area by certain outcome measures.

• Inpatient Rehabilitation Facility Compare - Compare inpatient rehab centers by certain outcome measures.

• Living Organ Donation Resource - Guide to Living Organ Donation. Living organ donors are a valuable and essential resource for patients in need of kidneys, livers, and other lifesaving organs and tissues.

• Long-Term Care Hospital Compare - Find and compare long-term care hospitals in your area by their infection rates and more.

• Medicare Health & Drug Plans - Complete a general or personalized (more accurate) plan search.

• MobilityWorks - Wheelchair vans and other mobility equipment to make life easier and more comfortable for people with disabilities and special needs.

• National Aging & Disability Transportation Center: ADA & Paratransit - Describes who is eligible for transportation services under the Americans with Disabilities Act and how paratransit works. “Looking for a ride” button links to Eldercare locator site, which has options by location.

• Nursing Home Compare - Find and compare nursing homes in your area based certain quality measures.

• Physician Compare - Search for a doctor or clinician in your area by name, specialty, group, body part or condition, and whether s/he takes Medicare. Also has quality ranking, performance scores, and patient survey scores.
• Suppliers of Medical Equipment - Find info on medical equipment suppliers in your area as well as federal and state agencies and private organizations.

Online Patient and Partner Support

• AARP Caregiving Forums - Connect with others on similar interests, experiences and needs.

• AgingCare.com - A community of carers. Offers a free exchange of ideas with professionals, experts, and people like you.

• American Heart Association Support Network - Learn from people like you and get support as a patient or carer.

• Dialysis and Kidney Disease Support - For people with kidney disease & families, dialysis & transplant patients

• Dialysis Discussion Uncensored - Open Facebook group for people on dialysis, family, and friends. NOTE: Open Facebook groups will post to your Facebook feed unless you change your settings.

• EndStageRenalDisease - For people with kidney disease & families, dialysis & transplant patients

• Family Caregiver Alliance National Center on Caregiving - Info for families who care for adult loved ones with chronic, disabling health problems.

• Fresenius Community Patient and Partner Support - Kidney Care Community of people connected by chronic kidney disease.

• Home Dialysis Central - Closed Facebook group offers 24-hour a day info and support for those who do or might want to do peritoneal dialysis (PD) or home hemodialysis (HD). This group is part of the Home Dialysis Central website.

• HOPEline - Telephone peer support for people with kidney disease.

• Kidney Pancreas Transplant Support - For people traveling the Journey of kidney and pancreas-related issues

• Kidney Support: Dialysis, Transplants, Donors and Recipients - Closed Facebook group for adults (18+) with kidney disease, dialysis, transplants, and kidney donors.

• Lotsa Helping Hands Create Community - Coordination service lets family and friends create a community to help a family carer with daily tasks that become a challenge in times of medical crisis, carer exhaustion, or when caring for an elderly parent.

• myDaVita Kidney Disease and Dialysis Forums - Forums and sub-forums on different topics for people with kidney disease.

• NKF Cares - Help Line for those affected by kidney disease, organ donation, or transplant. Trained specialist(s) answer questions and listen to concerns.

• NKF Peers - Telephone peer support for people with kidney disease.

• People of Color Renal, Kidney, Dialysis and Transplant Support Group - Closed Facebook group for people close to kidney failure, on dialysis or transplant (not just for minorities)

• Peritoneal Dialysis Support Group - Closed Facebook group for those on peritoneal dialysis & families.

• PKDCare - Info for people with polycystic kidney disease.

• Renal Support Network - Patients, family members or caregivers can connect with someone who has lived successfully with kidney disease.

• TransplantBuddies - Facebook group for people with kidney disease & families, dialysis & transplant patients

• VA Caregiver Support - Info on VA in and out of the home services to help you care for the Veteran you love and for yourself. Phone line, peer support mentoring, a workshop called “Building Better Caregivers,” financial help for family carers of 9/11 veterans, tips and tools, and a carer support coordinator who is a licensed professional.

Patient Organizations

• American Association of Kidney Patients (AAKP) - National nonprofit organization founded by patients to serve their needs, interests, and welfare. Free membership. Educational materials, support, an annual national meeting and chapter meetings in some areas. AAKP does legislative advocacy, and KidneyWorks–with the Medical Education Institute–to help people with non-dialysis chronic kidney disease keep their jobs.

• Renal Support Groups - List of in-person kidney disease support groups by state.

• Dialysis Patient Citizens (DPC) - National non-profit dialysis patient group that aims to improve quality of life through education and advocacy. Free membership is open to all people with kidney disease and their families.

• Home Dialyzors United (HDU) - At Home Dialyzors United our mission is: “To inspire, inform, and advocate for an extraordinary quality of life for the home dialyzor community.”

• Lupus Foundation of America - Devoted to solving the mystery of lupus and supporting those with lupus.

• National Kidney Foundation Donor Family Council - A council of the NKF for those who have donated a loved one’s organs for transplant.

• National Kidney Foundation Patient and Family Council - A membership council of the NKF for people with kidney disease and their families.

• National Kidney Foundation Transplant Council - A membership council of the NKF for organ transplant recipients and their families.

• Polycystic Kidney Disease Foundation - National nonprofit group for those with PKD. Chapters in many states; provides info to patients, professionals, and researchers.

• Renal Support Network - A nonprofit membership group that does a teen prom, support directory, educational meetings, advocacy training, and more.

Professional Organizations

• American Nephrology Nurses Association (ANNA) - Nonprofit membership organization of nephrology nurses

• American Society for Artificial Internal Organs (ASAIO) - Nonprofit membership organization with a mission to advance the research, development, and medical application of bionic technologies

• American Society of Nephrology (ASN) - Nonprofit organization of nephrologists

• American Society of Pediatric Nephrology (ASPN) - Nonprofit organization of pediatric nephrologists

• American Society of Transplantation (AST) - Nonprofit NKF membership organization of transplant professionals

• American Society of Transplant Surgeons - Nonprofit NKF membership organization for surgeons, physicians, and non-physician scientists in transplantation

• Council of Nephrology Nurses & Technicians (CNNT/NKF) - Nonprofit NKF membership organization of nephrology nurses and technicians

• Council of Nephrology Social Workers (CNSW/NKF) - Nonprofit NKF membership organization of nephrology social workers

• Council on Renal Nutrition (CRN/NKF) - Nonprofit NKF membership organization of renal nutritionists

• Council of Advanced Practitioners - Nonprofit NKF membershiop orgnization of advanced practitioners

• International Society for Hemodialysis (ISHD) - Nonprofit membership organization with journal

• International Society for Peritoneal Dialysis (ISPD) - Nonprofit international membership organization of professionals promoting and advancing knowledge of peritoneal dialysis

• International Society of Nephrology (ISN) - Nonprofit international membership of physicians and scientists

• International Transplant Nurses Society (ITNS) - Nonprofit membership organization for nurses in all areas of transplantation

• National Association for Nephrology Technicians/Technologists (NANT) - Nonprofit organization for nephrology technicians with members of other renal professionals

• National Renal Administrators Association (NRAA) - Nonprofit membership organization of administrators in hospital-based and freestanding clinics

• North American Transplant Coordinators Organization (NATCO) - Nonprofit membership organization of transplant coordinators and others working in the field of transplantation

• Renal Physicians’ Association (RPA) - Nonprofit membership organization for nephrologists, practice managers, advanced practice nurses, and physician assistants

Scholarships

• Carolyn Wilson Dialysis Patient Scholarship Program - Financial support up to $5,000 per person per year for people with end stage renal disease living in AR, LA, or OK.

• Culpepper Exum Scholarship - Two $1,000 scholarship per year for people on dialysis or a kidney recipient to attend an accredited educational program. One award is for a MO resident, and one is for a KS resident.

• Department of Education - Info on student loans and grants, including loan foregiveness, deferment, cancelling student loans, etc.

• Indiana Donor Network Scholarships - IN Donor Network staff members contribute money each year to fund scholarships for family members of IN organ and tissue donors, living donors, transplant recipients, people waiting for organs and their family members.

• Isabelle Christenson Memorial Scholarship - Aawards a scholarship to a transplant candidate, recipient, or donor, or a family member.

• Joseph DiMartino Scholarship Award - Two $500 scholarships as a one-time grant award to one graduating high school senior and one adult dialysis or kidney transplant patient who shows courage, strength, determination, generosity of spirit, and kindness. Must live in one of these NY Counties: Allegany, Cattaraugus, Chautauqua, Chemung, Erie, Genesee, Livingston, Monroe, Niagara, Ontario, Orleans, Schuyler, Seneca, Steuben, Wayne, Wyoming, or Yates.

• Kidney & Urology Foundation Patient Awards & Scholarships - National scholarships in different amounts for patients, family members, or professionals of different ages with kidney disease.

• Kidney Dialysis/Transplant Association Scholarships - $500-$1,000 scholarships for CT, ME, MA, RI, VT kidney patients (including donors) in or close family members. Amounts vary from year to year.

• Legacy of Life Scholarship - The WRTC (Washington Regional Transplant Center) awards $14,000 in scholarship to high school seniors in their part of VA: Arlington, Fairfax, Loudoun, Prince William, Stafford, and Fauquier counties, and cities of Alexandria, Falls Church, Fairfax, Manassas, and Manassas Park. Also, MD: Montgomery, Prince George’s, and Charles counties.

• Organ Donation Scholarship Opportunity for High School Seniors - Scholarship to promote organ and tissue donation as an important social responsibility while helping NM youth with higher education.

• Peter and Bruce Bidstrup Memorial Scholarship - Scholarships for dialysis and kidney transplant patients in AZ.

• The Jessica Beth Schwartz Scholarship - $2,500 scholarships yearly to transplant recipients under age 25 who are a senior in high school or at a 2 or 4 year college, university, or trade/technical school. Must live in the Gift of Life Donor Program (OPO) service area: Eastern half of PA, Southern NJ, or DE.

• Transplant Support Organization - Offers a scholarship to a student in a TSO supported school in NY who develops or takes part in an educational or public service effort relating to organ, eye and tissue donation.

• UAA Alaska Kidney Foundation Scholarship - Scholarships to prepare new nurses to provide safe and effective care to people with chronic kidney disease in Alaska. Award amount is a minimum $1,000 per academic year.

Staying Active

• Corporation for National & Community Service - Serve.gov is managed by a federal agency charged to promote volunteering and national service in the U.S. Aims to expand the impact of existing groups by engaging new volunteers in their work and encourage volunteers to develop their own “do-it-yourself” projects.

• Exercise: A Guide for People on Dialysis - Chapters include: Why Exercise? Who Can Exercise? What Kind of Exercise Do You Need? Getting a Good Start; Developing Flexibility; Developing Muscle Strength; Developing Endurance; Making Exercise Part of Your Life; How to Make an Exercise Plan; and Where to Get More Information

• National Center on Health, Physical Activity and Disability - NCHPAD helps people with a disability and other chronic health problems feel better by taking part in physical and social programs. These include fitness and water fitness, recreation, sports, use of adaptive equipment, and more. Provides tailored info, referral, and consultation to people with a disability, carers, and others online and through health communication.

• Staying Active with Kidney Disease - Kidney School Module 12 includes: why activity is important, barriers, causes of fatigue, symptoms of anemia and depression, sleep problems and tips for better sleeping, types of exercise, how to become active and stay active, and more.

• VolunteerMatch - Connects millions of people with a great place to volunteer and helps organizations better use volunteers to create real impact.

Surveys

• CES-D 10 Survey - Self-reported depression scale

• Dialysis Patient Satisfaction Survey - Patient satisfaction survey for in-center and home patients

• In-Center Hemodialysis CAHPS - Patient experience of care survey, survey protocols, and approved survey vendors

• KDQOL Complete - A web-based system to score, report, and manage KDQOL-36™ survey answers and assess patients’ health-related quality of life; also includes patient education information, based upon individual survey results

• Kidney Disease Quality of Life Survey - The Kidney Disease Quality of Life survey assesses health-related quality of life of people with ESRD; this site has the longer KDQOL-1.3™ and the 36 question KDQOL-36™; Excel or SAS for scoring

• Pediatric Quality of Life Inventory - Generic Pediatric Quality of Life Inventory (PedsQL) survey assesses health-related quality of life for children; child self-report (ages 5-7, 8-12, 13-18); parent-proxy report for (kids ages 2-4, 5-7, 8-12, 13-18); ESRD module

• PHQ Survey - The PHQ is a self-administered version of the PRIME-MD, contains the mood (PHQ-9), anxiety, alcohol, eating, and modules in the original PRIME-MD; the GAD-7 is a brief scale for anxiety

• PROMIS - PROMIS® (Patient-Reported Outcomes Measurement Information System) is a set of person-centered measures that evaluates and monitors physical, mental, and social health in adults and children; can be used with the general population and with individuals living with chronic conditions

• SF-36, SF-12, and SF-8 Quality of Life Surveys - Generic self-report survey measuring domains of physical functioning, role limitations-physical, bodily pain, general health, vitality, social functioning role limitations-emotional, mental health